Thursday, February 25, 2010

Groovy Hand & Wrist Splints

New custom Benik hand & wrist splint

Neavey's new custom hand & wrist splints are not only fashionably pink like her wheelchair, they also make her look like a rad rocker. Don't you think? Although she does come from a line of drummers, (me, my baby brother and my dad) she is not wearing them due to injury sustained while playing the skins. Since Neavey uses her hands less and less these days, her wrists have started deviating toward her ulna (the outside bone in the forearm). In order to reduce the chance of muscular contractures, she wears her left (less functional hand) Benik for 8 hours during the day and the right one for 8 hours at night. They have metal stays on the top and bottom and a hard plastic stay along the ulna to keep her hand and wrist in neutral. She doesn't seem bothered by them at all. I think she looks rather tough in them!

She was fitted for these along with new ankle foot orthotics and a new nite splint in January when I realized she had outgrown her old ones. Our awesome orthotist, Jason, at Dynamic Orthotics confirmed that she had at least an inch of growth since May of last year. I have only a few inches left on her. YIKES!

CHECK IT OUT- from Amherst Alumni magazine

Neavey's diagnosis or lack thereof...

Her neurologist would tell you she has cryptogenic generalized epilepsy. It's not so much a diagnosis but a state or a condition. What does it mean? Neavey has complex partial seizures and generalized seizures. They originate generally in any part of the brain. And the kicker is...we don't know why she has them, or why we can't control them completely.

And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.

No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.